Measuring Caregiver Networks of Older Adults with Alzheimer's Disease

该提案的总体目标是使用社交网络测量方法(Network Canvas) 获取与阿尔茨海默病患者相关的家庭照顾者的扩展定义 和相关痴呆症(AD/ADRD)，特别关注积极/消极关系方面。这 建议的方法将推动PWD-照顾者二元体研究，以涵盖测量真实世界 PWD-照顾者网络。在阿尔茨海默病(PWD)患者中，有显著的 个体如何定义“家庭”照顾者的群体异质性。大多数研究都集中在 护理者-有一个单独的主要护理者的PWD二元体。这种二元体方法可能不会被表示 现实生活中，因为有多个家庭成员和朋友支持照顾残疾患者。多个护理者可以 对义务、对护理的期望以及护理的积极/消极方面也有不同的看法。我们的 先前的研究表明，照顾者之间的互动可以是积极的(例如，团队合作到 说服残障人士接受帮助)或消极的(例如，引起情绪困扰的冲突)。有一种缺乏 关于如何在网络层面上衡量这些人际互动的研究。为了减轻 这些关系测量的差距，我们的团队已经构建了一个免费的，开源的，由NIH资助的软件 为研究人员提供的名为Network Canvas的套件，用于识别和映射社交网络数据。我们的目标是： 目标1.使用网络游说来衡量和绘制残疾照顾者的社会网络 方法，以考察个体如何定义“家庭”照顾者的群体异质性。 目的2.测量照顾者和残障人士的积极幸福感的网络预测因子。我们将进行一项 对200个PWD照顾者网络(最多1000人)进行的大型多站点(IL、IN、HI)研究--使用滚雪球 招聘以确定/面谈网络成员--以及网络画布方法。 招募将通过跨学科社区合作伙伴、医生办公室和正在进行的NIH- 资助的群体--代表农村/城市、族裔/种族多样性、男女同性恋、双性恋和变性者群体。我们期待着 多层PWD-Caregiver网络：1.经照顾者同意的PWD(轻度、中度AD)， 2.)仅限照顾者(患有严重痴呆症的残疾患者/无法同意)，3.仅限同意的PWD，否 照顾者(未加为好友)。混合方法访谈将检查以患者为中心的详细结果 衡量标准、人际互动(积极/消极)以及网络对个人的影响。 通过这项研究，我们计划有一个1。)更好地了解如何衡量照顾者 网络，2。)确定护理人员网络的哪些方面最能预测 照顾者和残疾人士的心理和身体健康状况，以及将网络投入运营 了解可与其他人共享的照顾者系统的测量方法 研究人员为照顾者-PWD研究社区提供更大的好处。

The overall goal of this proposal is to use a social network measurement methodology (Network Canvas) to capture expanded definitions of family caregivers related to people living with Alzheimer’s disease and related dementias (AD/ADRD), with special focus on positive/negative relationship aspects. This proposed methodology will advance PWD-caregiver dyad research to encompass measuring real-world PWD-caregiver networks. Among people living with Alzheimer’s disease (PWD), there is a significant population heterogeneity in how individuals define “family” caregivers. Most studies concentrate on the caregiver-PWD dyad with one singular primary caregiver. This dyad approach may not be represent real-life, since multiple family members and friends support the care of PWD. Multiple caregivers may also have differing ideas of obligation, expectations of care, and positive/negative aspects of care. Our prior research has shown that interactions between caregivers can be positive (e.g., teamwork to convince PWD to accept help) or negative (e.g., conflicts causing emotional distress). There is a lack of research on how these interpersonal interactions can be measured on a network level. To mitigate these relationship measurement gaps, our team has built a free, open-source, NIH funded software suite for researchers called Network Canvas, that identifies and maps social network data. We aim to: Aim 1. Measure and map the social network of caregivers of PWD using the Network Canvass methodology, to examine the population heterogeneity in how individuals define “family” caregivers. Aim 2. Measure network predictors of positive wellbeing for caregivers and PWD. We will conduct a large multi-site (IL, IN, HI) study of 200 PWD caregiver networks (up to 1000 people) - using snowball recruitment to identify/interview members of the networks – and the Network Canvas methodology. Recruitment will be through interdisciplinary community partners, physician offices, and ongoing NIH- funded cohorts - representing rural/urban, ethnic/racially diverse, LGBTQ groups. We anticipate multiple tiers of PWD-Caregiver networks: 1.) consentable PWD (mild, moderate AD) with caregivers, 2.) Caregivers only (PWD with severe dementia/unable to consent), 3.) consentable PWD only, no caregivers (un-befriended). Mixed method interviews will examine detailed patient-centered outcome measures, interpersonal interactions (positive/negative), and effects of the networks on the individual. Through this research, we plan to have a 1.) Better understanding of how to measure caregiver networks, 2.) Identify which aspects of caregiver networks are most predictive of the impact on psychological and physical well-being of caregivers and PWD, and 3.) Operationalize a network measurement approach to understand caregiver systems that will be shareable with other researchers to provide larger benefit for the caregiver-PWD research community.